1. Community
  2. Blood & Immune System
  3. Haemochromatosis

I was diagnosed with juvenile haemachromatosis 7 years ago.

Posted , 1 user is following.

nathan39695
nathan39695

diagnosed with juvenile haemachromatosis 7 years ago. After battling depression and muscle pain for years beforehand. my levels didn't drop below 2000 until after 6 months of venesections twice weekly. it's been a long road.

my issue now after getting levels to >50 and testosterone somewhere back to normal range, is all my joints. I've had bone marrow odemas in my knee and ankle starting 4 years ago. knee was treated with infusions. the ankle didn't respond to treatment and an operation a year ago has also failed to reduce pain. to the point of thinking about amputation.

I'm only 38 and doctors seems to be running out of ideas/suggestions. is there anybody else suffering like this at my age. please get in touch.

0 likes, 0 replies

0 Replies

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.